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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain erupted behind my one eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Leading experts in treating the disorder note this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a